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Monday, June 22, 2009

The Diagnosis

This is the hardest blog post I've ever had to write. It's been almost a week that hubs and I have been reeling with the information that was provided to us, and I'm writing about it here in a genuine and sincere attempt to ask for your prayers as we head into the difficult journey that lies ahead.

On Monday, June 15th, hubs, LO and I headed to my 20-week ultrasound appointment with the anticipation of seeing images of our little boy. The ultrasound seemed relatively normal, measuring this and that, listening to the heartbeat, watching our son squirm around in his safe little home.

We waited what seemed like forever for the doctor to come in for the quick "any questions?" discussion, where we would say no, we're good to go.

Unfortunately, the doctor said something to us about not having very clear images of the baby's heart, and that she wanted us to visit a specialist who had more advanced equipment that could capture the pictures of the heart that were needed. She told us not to worry, that 9 times out of 10 it's nothing, don't be concerned, etc.

Miraculously I was able to heed her advice and not worry about the appointment that had been scheduled for us on Thursday, a good 3 days later. I was surprised to get a call not long after we left the 20-week appointment to tell us there was availability for us to come Tuesday, the very next day, for the appointment with the specialist. We jumped on it, just so we could hurry up and get our peace of mind back.

On Tuesday, June 16th, hubs and I left LO with Mona and met at the specialist's office for our ultrasound appointment. We were taken back and the technician started the ultrasound. She did some of the same measurements they had done the day before, and I patiently waited for her to give us an "all clear."

To my utter shock and horror, I vividly remember her muttering the phrase "I won't pretend that every is okay..." as she was trying to coerce the baby to move into the right positions so she could get a look at exactly what was going on. She left the room and brought the specialist, Dr. Greig, back in with her, and had him continue with the ultrasound. He was focusing on our son's heart, although all we could see was the black and white image surrounded with red and blue blotches that apparently indicated blood flow.

The doctor then dropped a completely unexpected bomb on us which we were not prepared to handle. He told us that it appeared our son had Hypoplastic Left Heart Syndrome (HLHS) and a Ventricular Septal Defect (VSD). We were in utter disbelief. We had never heard of either of these conditions and immediately wanted to know what the impact would be for our unborn son.

We left the ultrasound room and waited for the specialist in a tiny little room where he would come in and explain a bit more about these conditions. It felt like an eternity in that little room, our minds racing and buzzing with all of the "what ifs" and "how did this happen" etc.

The doctor finally came in and explained to us that HLHS is one of the most complex and rare congenital heart conditions in which the left side of the heart is critically underdeveloped. With HLHS, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Without treatment, hypoplastic left heart syndrome is FATAL, usually within the first few days of life.

The doctor attempted to provide 4 options to us, the first of which was termination of the pregnancy. I wouldn't even let him get the words out of his mouth before interrupting to tell him that wasn't an option. The next option was called "comfort care" where the baby is born and you do basically nothing but hold and love him until he passes, within the first few days of his life. Again, NOT an option. The third option was a heart transplant, in which case it would be very unlikely to find a new heart for our son within the first few days of his life. The final option was the ONLY option for us. It involves a three-step surgical procedure designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygen-rich blood it needs. It is by no means a permanent "fix" to the problem, but rather a way to surgically reconstruct the heart to make it more likely to perform the functions of a regular heart.

As you might imagine, we were completely devastated at the diagnosis, and for the next 24-48 hours, we were totally numb as we both attempted to digest the information and wrap our minds around what was in store for us. We felt totally deflated, and the joy and anticipation of the pregnancy and of expecting a new baby were completely lost.

We struggled through the first week, telling only immediate family and a few close friends about our situation. It was a very difficult and trying time, most of which I spent researching HLHS on the Internet, finding both uplifting, positive information as well as deflating, disappointing, heart wrenching information.

So finally today arrives, Monday, June 22nd. We had our appointment with a Pediatric Cardiologist, Dr. Horne. While we weren't expecting the diagnosis to change, we were hopeful that he wouldn't find any additional problems with the baby or his heart. Dr. Horne did confirm the diagnosis of HLHS and confirmed the baby would need the 3 surgeries in order to live.

While we are still reeling with the information and are devastated to learn that our baby has a serious and rare heart defect, we are trusting in God for His hand of healing and protection on our son. We know He is able to do more than we could ever ask or imagine, and will continue to trust in Him throughout this journey.

Thank you in advance for your thoughts and prayers as we face an uncertain future. I will update the blog as often as possible/necessary throughout this process. I don't have another appointment scheduled until July 15th, so there hopefully won't be much of anything to share about the baby and his heart problem, but I will also continue to post about the fun and random things that happen to us and our precious LO. Can you believe she'll be TWO in just over a month? I'll be working on party details soon, so you can look forward to hearing more about that, too!

I can't begin to imagine what runs through your minds everyday having heard this news and I know nothing anyone can say will make it easier for all of you. But, I do want you to know we pray for you everyday since we learned that something was wrong and will continue to pray for your family and your little boy.

My daughter is missing her right ventricle. The first few years were difficult, but she had the Fontan when she was 6 years old. She is now 26 years old and doing wonderfully. She is very good about taking care of herself. Please feel free to visit her website. www.angelfire/tx4/vicI hope all goes well for your little boy.

I'm Joelle's sister. She told me about your little one and I just wanted to let you know that I'll be praying for you. I have a friend whose sister has a little boy with HLHS. We prayed for her throughout her pregnancy, but I've never actually met them. But they have a blog that may be encouraging to you. He's 2 now. They are Christians and may be good to talk with. The blog address is ethanscottmiles.blogspot.com I think she started blogging when she first learned about his diagnosis, so you may want to go back to 2007 to read about their experience. I'll be praying.

Reading your postbrought me to tears. I will never forget those feelings after hearing the same diagnosis from dr.greig. That is a wonderful office and you will get amazing care. Sitting by Josiahs bed at musc right now I can tell this place is amazing and I had my doubts. We are praying for you as we pray for all our heart baby friends here in the pcicu.

I know exactly how you are feeling and what you are going through. I am at just about 36 weeks right now and my little girl also has HLHS. It's a very rough road, especially this being my first child. All the excitement and joys of having a first baby have turned into fear as soon as we heard the diagnosis. But as the weeks go on I don't want to say it gets any easier but I think we finally let it sink in and we have accepted the fact that we have to go through this. Now we have been getting excited to see our little girl for the first time and we can't wait for her to be here. I will be having a scheduled C-Section on July 20th and our HLHS journey will begin. You are more than welcome to follow my blog and ask any questions at all. I hope you guys are all doing ok and getting through this tough time.

Kathy-You will get through this just like we did. It's a tough road but you are not alone. Feel free to contact us anytime to talk it out. Not knowing what to expect can leave some crazy questions in your head. Don't be ashamed, I think I asked them all.